bad news

[Guest guest]

Dear Sue,

I'm so sorry to hear about the test results. I was really hoping it would

work out for you. Just remember that you have many people thinking about

you, and wanting to take on some of your sadness, even though we know we

can't. I hope you start feeling better soon... Cuddle Hugo (right name?)

lots, and take care of yourself.

>From: Roselle50@...

>Reply- onelist

>LiverSupport-lonelist

>Subject: [ ] BAD NEWS

>Date: Sun, 20 Jun 1999 21:08:03 EDT

>

>From: Roselle50@...

>

>Hi Group: Yesterday I received the results from my tests that were done on

>June 7th. The test before was done on May 5th so it was only a month and I

>flunked the Study with Budesonide.

>

>As of yesterday I stared at 30 mg of Predisone and 50 Mg of Imuran and was

>taken off the study. My numbers were : AST 338 U/L and in May it was 26

>U/L. By biliruben lever was nor5mal at 0.7 mg/dl but the Gamma Glovulin

>Concentration is increased to 2.42 g/ld which was 1.28 g/dL on May 5th.

>

>Dr. Czaja tired to call me but I was on vacation but will call him tomorrow

>and also my doctor here at home.

>

>I am very depressed but I will get over it. I guess I knew that I was

>sleeping more and alot of pain in my liver area.

>

>Well, tomorrow is another day. LOL

>

>Sue AIH

>Wisconsin

>

>------------------------------------------------------------------------

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[Guest guest]

Debbie:

Thanks for the support but you should of said CHINS!! Bad enough that a

family trait is a double chin and with AIH is makes the alot more chins!

I will get over the depression but it felt like kicked in the stomach. I had

high hopes for the medicine.

Sue AIH

Wisconsin

[Guest guest]

: Thanks for the note but Halo did not like to be called Hugo. She is

real my support now. She doesn't sass back and and loves no matter what. In

fact she is in the computer room as always sleeping behind me. Of course she

is snoring just like her Mom. When I went on vacation last week, I really

missed her and I know she missed me. She is always by my side. Even 's

black lab Libby Jane knows I am sick because she comes and sits by me when I

am on the couch and sleeps by the couch sometimes.

So you see I am really have alot of support.

Sue AIH

Wisconsin

[Guest guest]

Elaine:

Thanks for the support and I know I will be better in a couple of days. When

I talked to my Doctor week weeks ago and he cut my hours to four hours a day

I knew that I was getting sick because be being so tired after working and

would sleep for 3 to 4 hours after work.

Also I asked about what stage I was in because people talk about what stage

they would be in so my doctor and I looked up the last Biosphy from Mayo and

I am in stage " 0 " so that is good.

Sue Aih

Wisconsin

[Guest guest]

Hi Sue -

Keep your chin up : ) I know from experience that with the right

combination of medication ... your numbers will come back to normal.

You're in my thoughts.

Debbie

AIH

Michigan

[ ] BAD NEWS

>From: Roselle50@...

>

>Hi Group: Yesterday I received the results from my tests that were done on

>June 7th. The test before was done on May 5th so it was only a month and I

>flunked the Study with Budesonide.

>

>As of yesterday I stared at 30 mg of Predisone and 50 Mg of Imuran and was

>taken off the study. My numbers were : AST 338 U/L and in May it was 26

>U/L. By biliruben lever was nor5mal at 0.7 mg/dl but the Gamma Glovulin

>Concentration is increased to 2.42 g/ld which was 1.28 g/dL on May 5th.

>

>Dr. Czaja tired to call me but I was on vacation but will call him tomorrow

>and also my doctor here at home.

>

>I am very depressed but I will get over it. I guess I knew that I was

>sleeping more and alot of pain in my liver area.

>

>Well, tomorrow is another day. LOL

>

>Sue AIH

>Wisconsin

>

>------------------------------------------------------------------------

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>

>How is ONElist changing YOUR life? Visit our homepage and let us know!

>------------------------------------------------------------------------

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>

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[Guest guest]

[ ] BAD NEWS

>From: Roselle50@...

>

>Hi Group: Yesterday I received the results from my tests that were done on

>June 7th. The test before was done on May 5th so it was only a month and I

>flunked the Study with Budesonide.

>

>As of yesterday I stared at 30 mg of Predisone and 50 Mg of Imuran and was

>taken off the study. My numbers were : AST 338 U/L and in May it was 26

>U/L. By biliruben lever was nor5mal at 0.7 mg/dl but the Gamma Glovulin

>Concentration is increased to 2.42 g/ld which was 1.28 g/dL on May 5th.

>

>Dr. Czaja tired to call me but I was on vacation but will call him tomorrow

>and also my doctor here at home.

>

>I am very depressed but I will get over it. I guess I knew that I was

>sleeping more and alot of pain in my liver area.

>

>Well, tomorrow is another day. LOL

>

>Sue AIH

>Wisconsin

Dear Sue,

So very sorry to hear the news. We are all pulling for you out here. I know

it's easy for the rest of us to say " don't lose hope " , but DON'T LOSE HOPE!!

The depression will go away. Right now it is only natural and like you said,

tomorrow is another day. You are in all our prayers.

Elaine

Baltimore

>

>------------------------------------------------------------------------

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>

>How is ONElist changing YOUR life? Visit our homepage and let us know!

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>

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>

[Guest guest]

Hi Sue -

You haven't seen me lately LOL. I'm being weaned down from the prednisone

(i've been on it for 14 years already .. can't seem to get down below 10 mgs

and i'm 50 mgs of imuran). I'm going through the withdrawals now. I look

like the pillsbury dough boy LOL (in my eyes anyway). Always seems that

when my GI starts decreasing my prednisone I get the swollen legs and feet

... feels like I'm walking on pins. But I will put up with the side effects

of withdrawals .. again ... and will take it over the high LFT's any day.

Seems like when I feel my worst .. my labs are at their best. Go figure.

I'll probably go for another fews months on 10 mgs of prednisone .. have a

" relapse " as my GI calls it ... wil have to increase back to 20 mgs and put

up with the side effects of the increased meds. A neverending circle huh?

Oh well, it's a way of life now. The depression will subside .. give it

time .. and remember you are NEVER alone : )

Debbie

AIH

Michigan

Re: [ ] BAD NEWS

>From: Roselle50@...

>

>Debbie:

>

>Thanks for the support but you should of said CHINS!! Bad enough that a

>family trait is a double chin and with AIH is makes the alot more chins!

>

>I will get over the depression but it felt like kicked in the stomach. I

had

>high hopes for the medicine.

>

>Sue AIH

>Wisconsin

>

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>

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[Guest guest]

Geri:

I was hoping that the Bud would work. But back in my mind I knew. But I

will be OK just mad. I will be going to work today but might not stay so I

can come home and get the calls in to the doctors.

It is a cloudy day here this morning. The weather man told us colder by the

lake today but that is OK because I can't take the hot weather.

Halo they think is about 2 to 4 years old. Yes she is fun to have until

about 5:30 this morning she was up and ready to go out. I let her out and

when we came back up the stairs I went into the bathroom and told her to go

back to bed. Well she was not in my bed but she was in 's bed. I guess

I didn't tell her what bed to go to.She is alot of fun.

Thanks for the thoughts and also I think cats will travel fine. If like Halo

there will be no trouble.

Sue AIH

Wisconsin

[Guest guest]

Dear Sue,

I'm so sorry that Budesonide didn't work for you. I know that you had high

hopes. It sounds like Dr. Czaja and your regular GI are worried about you.

So, now your big worry is going to be, " what next? " That was quite a jump

in your labs. No wonder you haven't been feeling well. It's amazing that

you managed your vacation to San Diego, feeling like you must. Was it Dr.

Czaja who put you on Budesonide? I thought it was only a substitute for

Prednisone and not for Imuran? Please, keep us posted. I'll be thinking

about you.

How old is Halo? She sounds like a little sweetheart. I really do miss

having a dog share our lives. The desert is no place for a dog, though.

They can't really get out and a dog needs at least a yard if at all

possible, darn it. But today it was 107° and that's way too hot for a

dog. Did you know that they don't perspire, which is why they pant, to

dissipate body heat? If we take our planned drive in September, down the

Northern California and Oregon coasts then to Portland, we're bringing our

cats. That should be intersting. We have a minivan so we can take the

seats out and make them comfortable. Dogs travel so why can't cats? I

guess we'll find out. We drove from where we lived in mid-Switzerland to

Paris with 5 cats and a dog when we moved back to the US. Stayed at the

Holiday Inn by CDG airport in Paris for 5 days with all of the animals.

The French like to always seem blase so they didn't even blink but I'll bet

the hotel staff talked about it when they went home at night!

Take care,

Geri

[Guest guest]

Hi debbie,

YOU've been having this for 14yrs, I've been at this like 11yrs or so and i

know for like the last year and half, i've been on the predisone and imuran,

but i'm also on the transplant list. Are you in the same situation or do you

have fibrosis. I believe i have stage IV of cirrohsis being that V if i am

correct and Geri could help in this, being liver failure,

If your on this fourteen years maybe i will be in same situation and not need

transplant if the predisone and imuran do their job.

LOL

[Guest guest]

Sue,

I'm glad HALO is so great! Sorry, a have a friend with a dog named

Hugo...oops!

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] BAD NEWS

>Date: Mon, 21 Jun 1999 00:31:23 EDT

>

>From: Roselle50@...

>

>: Thanks for the note but Halo did not like to be called Hugo. She is

>real my support now. She doesn't sass back and and loves no matter what.

>In

>fact she is in the computer room as always sleeping behind me. Of course

>she

>is snoring just like her Mom. When I went on vacation last week, I really

>missed her and I know she missed me. She is always by my side. Even

>'s

>black lab Libby Jane knows I am sick because she comes and sits by me when

>I

>am on the couch and sleeps by the couch sometimes.

>

>So you see I am really have alot of support.

>

>Sue AIH

>Wisconsin

>

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[Guest guest]

Sue,

I got my labs today and except for elevated GGTP, Cholesterol, Glucose and

a few other things that only confirm what I already know (I have liver

disease), things look pretty good. I guess that's why I'm not interested

in rocking the boat. If I can maintain this status quo indefinitely, or at

least for awhile, I'll continue to feel blessed.

I know that you had hopes that Budesonide would work for you. I'd be

tempted too, if I thought it would be the answer to the weight problem but

I think someone said that it doesn't affect weight one way or the other.

It apparently does reduce other risks, though. I'll be interested to hear

how your doctors interpret your elevated labs. I hope that they feel

confident they can brings things back to comparitively normal ranges. I

can't imagine how you can work even part-time, though I often think I might

be able to. I daydream about getting back into the real world sometimes.

Our beloved Alfie was a little guy we rescued from the Seattle Humane

Society. He'd been abused and had dirt impacted in his nostrils. He was so

depressed he wouldn't look at us. He looked like a bandylegged, pigeon

toed, stubby legged Golden Retriever and was our darling for 17 years.

When we lived in Europe, he traveled all over with us because you can take

dogs almost anywhere there, including into restaurants. Thus, if he

could've talked, he would have told you how he'd spent a week in Poland

visiting family friends, stayed in interesting hotels all over France,

Germany and Austria and was accused of being an illegal immigrant once by

the Swiss customs authorities. He lived with us in an apartment there for 3

years and never was outside without a leash except when we'd take him to

some remote wilderness area and let him waddle around (he got fat but he

was always happy.) Animals can become such an important part of our lives,

they're legitimate family members and deserve to be treated as such. My

husband thinks that our love of animals and the fact that we have always

had a menagerie, has kept us healthier than we deserve to be. Certainly,

they've given us so much happiness.

Your Halo sounds like an Alfie to me. I'll bet she's a sweetheart!

Schuyler, our Birman (cat) loves to ride in a car. If we leave the window

open in the van in the garage, he'll climb inside and nap. More than once

we've driven down the street only to have him jump into the front seat

beside us and settle in to sightsee. Angie is a little more timid, but I

think she'll adapt. I hope so!

Take care and let us know what the doctors say!

Geri

[Guest guest]

:

That is okay to call Halo - Hugo. She was very crabby today to my daughter

that she almost spend the night outside. I think that sometime she is too

much my dog.

Sue AIH

Wisconsin

[Guest guest]

Geri:

I will be having the liver blood test on Friday and should know by Monday.

We will send the results to Mayo Clinic. I know I am in good hands here with

my doctor. He asked my today if I wanted to work until I got better or what.

I choose to work at night when I can get more done and no one to bother me.

When I started working at the place I am employed, there was a man doing by

job and worked night. I remember that he never had a clean stacker. I work

4 hours a day now and I still can keep up somewhat. I just take a day at a

time.

Halo is so much fun and 's dog Libby Jane is so good to her. She know

that she out weighs her by 50 pounds and remembers she gets yelled at when

she does something wrong to Halo but usually they are friends.

Well I will finish my e-mails and go to bed. But I have been having a hard

time sleeping the last three days since I found out I was sick again. Oh

well, I will sleep in the daytime.

Sue AIH

Wisconsin

[Guest guest]

Hi ,

A little late on this, but re stages of cirrhosis, my biopsy showed,

" Cirrhosis, stage IV, Scale of IV " and " Moderate to Severe Inflammatory

Activity, Grade 3-4, Scale of 4. " The doctor who did the biopsy commented

to me, " I wonder why you developed cirrhosis so quickly? " Since I didn't

know I had liver disease at all before the biopsy and neither did anyone

else, he must have found something in the labs or the biopsy that inspired

that remark. However, to understand it in context, when he made the

comment, he had diagnosed my condition as PBC, not AIH. And, I hadn't

really been significantly ill even days before I was hospitalized. Just a

few clues like very dark urine, pedal edema and severe ascites. No

jaundice and no pain that was bad enough to remember.

Notes in the biopsy summary say, " Assessment of inflammation (grade) and

parenchymal damage (stage) in the liver biopsy is done according to the

criteria of Batts and Ludwig in their paper: Chronic Hepatits. An update

on terminology and reporting. American Journal of Pathology. 1995. "

I've read somewhere that we can survive with up to 80% liver function loss.

After that, without a transplant we can't survive. However, clearly even

stage IV cirrhosis doesn't mean 100% liver function loss (assuming stage

III would be 75% loss) since I'm neither transplanted nor dead and in fact,

17 months after the biopsy I seem to be doing very well indeed! I think

that it's more important to consider what the liver damage and inflammation

causes than the fact that they both exist. Thus, someone with less

cirrhosis (or even none) or inflammation, but who has other complications

might be in greater need of a transplant than someone with the same numbers

I had in November, 1997.

I have to comment, grudgingly, that if it weren't for Prednisone and

Imuran, I doubt that I'd be here today and if I were, it wouldn't be with

the original equipment!

Take care,

Geri

[Guest guest]

HEY GERI,,

THANKS FOR THE REPLY,

MY DOC. HAD TOLD ME THAT THE LIVER IS A VERY STRONG ORGAN THAT IT CAN TAKE

ALOT OF PUNISHMENT, THAT IT TAKES AN AWEFUL LOT TO DAMAGE IT, I HAD MY

BIOPSY RESULTS LIKE IN 94 I BELIEVE, I'VE TAKEN LOTS OF PUNISHMENT SINCE

THEY REALLY DIDN'T KNOW WHAT WAS WRONG WITH ME. THEY DID TEST ME ON

AUTOIMMUNE BUT IT CAME BACK NEGATIVE, DID YOU RECEIVE THE POEM OF ALWAYS SAY

I LOVE U. DID U LIKE IT. WELL HOPE YOUR FEELING WELL, ME I FEEL GREAT HERE,

JUST THAT I SLEEP SO MUCH, MAYBE THAT'S WHY, WELL TALK TO U SOON,

LOL

MIGUEL AIH

BROOKLYN

[Guest guest]

Sue,

Sorry I'm so slow about answering. Are the days getting shorter or is it

just my imagination? It seems that every day is about 4 hours shorter than

it used to be.

Please do let me know what they find from the tests that were done today.

Obviously something is going on, but it sounds like you''re in good hands.

I really admire you for being able to continue to work. If you can do it,

undoubtedly it helps you maintain a better outlook on life.

Dogs can be such wonderful companions. Obviously yours are regular members

of the family. Halo sounds like a sweetheart. They're like children except

they don't go through such a traumatic adolescence.

Hope you are feeling okay and especially that nothing too serious is

happening now.

Take care,

Geri

[Guest guest]

!

Yes, I saw the poem and it was lovely. I'm sorry I've been so slow getting

caught up with my online life.

I think that your attitude is great, considering what you've been through.

I can't imagine being able to handle the physical challenge of being a

lifeguard, running marathons, and keeping up the pace you do. If you can

figure out a way to patent your terrific attitude, you'll be a billionaire.

I don't get enough sleep and this is partly why! Now, if I don't go to bed

my husband is going to turn caveman and come out of the bedroom roaring

that he is BOSS and that I need sleep now and then.

Take care,

Geri

[Guest guest]

Leona,

I do hope that nothing comes of the cells they found when you had your Pap

Smear. My daughter went through the same thing almost 5 years ago and so

far, nothing has come from it. I hope it works out the same way for you.

She was in her early 20's at the time.

I know this sounds like a platitude, but life does seem very unfair and

unevenly balanced sometimes. I hope for the best. Too bad you have to

wait so long to find out if anything is actually going on.

Take care,

Geri

[Guest guest]

Leona:

I know how you feel. I feel at times WHY ME GOD? Then I think of other

people that are sicker and can't be treated.

Just keep your head up and smile. Tomorrow is another day.

Sue AIH

Wisconsin

[Guest guest]

Dear Leona,

I'm so sorry you've gotten this bad news. I think you definitely have your

share of challenges to deal with. I'll be thinking of you in the next

little while, and especially on August 3rd. I hope everything goes well...

>From: Leona Singleton <lona@...>

>Reply- onelist

> onelist

>Subject: [ ] bad news

>Date: Fri, 9 Jul 1999 17:18:46 +0800

>

>From: Leona Singleton <lona@...>

>

>i went to the Doc last week for a regular Pap Smear

>he saw a lump and scraped some cells off it

>I got the results back and i have to go to hospital and have a colposcopy

>and

>biopsy done.... last year i had one of these done and it showed i have

>precancer cells or something like that... i am so worried..

>i know ive been through worse but the thought of having Cervical cancer at

>the age of 20 as well as all my other health problems doesnt really bring

>joy to

>my or my families life...

>I know there is always someone worse off than me but i really feel like the

>unluckiest person at the moment

>i go in for the tests on august 3rd

>

>regards

> Leona Singleton

>

>

>---------------------------

[Guest guest]

Leona...

I'm so sorry to hear of your added troubles....I think you said you go to

docs on the 3rd of August...Waiting seems to be a huge part of any illness.

I too have been in the waiting game...Had some problems back in May and had

Ultra sound and found I have cysts on both of my ovaries...Having lots of

pain...some days much worse than others...Just standing can double me

over....He (doc) has me on 2 different pain pills which don't give me much

relief...Seeing new docs this week hopefully...Having to deal with this and

taking care of Tylers medical conditions can be very tiring....Luckily Ty is

doing well but we all know that balls falls sooner or later and I'm not sure

how I'm going to handle both of us at the same time...My mom lives with us

(78 yrs old) has had 2 strokes in the last year and has

ostioperosis....Sometimes just organizing the doc. visits can be

tramatizing.... Well haven't I just gone on and on...sorry....all our plates

are full in one respect...I keep thinking that God only gives me what I can

handle....

I hope you results are good and that you will handle anything that comes your

way.

Luanne Ty's mom

[Guest guest]

Dear Marta:

I would look forward to signing on because I knew you would be there.

Without getting into my own neediness, I am concerned about you, personally.

I know you have such a high commitment to this group, you must really be

having a hard time. I wish you the best as you go about taking care of your

health. I hope that you continue to check in on us, once in a while. We'll

be thinking of you....

Sincerely,

Annie

[Guest guest]

Good Morning Sylvana,

You are on my prayer list, but then everyone here is on it. I have called

others and they have added you and your family...

I have no answers for you, but this I know...There are only one set of

footprints...Rest in his arms....

Love ya'll, have a great day, remember to laugh all day. Laughter is music to

the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy,

especially love a lot, the more love you give the more you get in return.....

Joan, Florida

AIH, 1 Gall Stone, HBP

Fox

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[Guest guest]

Sylvana

I am so sorry you received such bad news. My thoughts and prayers are with

you.

Tracie